119 weeks since diagnosis

We have noticed recently that Italy was present in our family’s life for many years: we’ve spent there honeymoon, Inga’s mum supported Italy during World Cup 2006 final in Berlin, Inga’s brother Maks supports Azzurri since he was born e.g. during 2008 and 2012 championships. When Inga was 2 months old she kept her fingers […]

118 weeks since diagnosis

Our live is made of happy days mixed with moments of sadness. On one hand Inga started treatment – which is great! But on the other hand she is still ill and she will need extra care probably till the end of her life. That fact somtimes defeats us but we know we must be […]

117 weeks since diagnosis – 1st week of treatment!

Dears – it happened: Inga started treatment. The day we’ve been dreaming about for 117 weeks has finally come.   Before we write any more, we would like to thank all of you – without your support this day would not come as soon as it was only possible. Thank you to those who have […]

116 weeks since diagnosis

Those of you who has ever been in mountains or have a walk along the beach knows how much pleasure it brings to everyone. With Inga’s case it a little bit more difficult but it is not impossible. Last weekend we went for a walk by Southerndorn Cliffs. We made a deal with Inga – […]

115 weeks since diagnosis

Our weeks go by relentlessly… We wish Inga has already treatment, that slow down or event stop disease progress. While waiting for a drug we do not stop doing physio. But not only during special sessions and while attending swimming pool but also during our “walk” in the park. This time Inga was doing exactly […]

114 weeks since diagnosis

We have noticed, our life is like a race. Every day we challenge SMA monster to win. Thank God we have our pit-stops: physiotherapy and other exercises. Although it is not allowed to fuel during F1 race anymore we still fuel Inga: a proper diet has been implemented and we fight for a drug to […]

113 weeks since diagnosis

Last Friday Inga celebrated her 4th birthday. She wear her beautiful dress, asked to wash her hair with mummies’ shampoo and later help her brush them and put her favourites hair clips on. There were quests later in the evening, there was a b-day cake with candle, there was music and a lot of smiling. […]

112 weeks since diagnosis

Last week Inga spent at physiotherapy camp in the Neurorehabilitation Centre. As usual, there were massages, stretching, ball exercises, breathing exercises and more. However, there was a new one: hipotherapy, which is the rehabilitation with a help of horse. A lot of people advised us this form of exercise until we finally decided. And it […]

111 weeks since diagnosis

It was a week full of GREAT emotions for Inga – our little girl was attending the SMA Conference for the first time in her life. We were concerned about whether she would find herself among hundreds of other children with this disease she will see for the first time. In addition we, wanting to […]

110 weeks since diagnosis

Wheelchair – symbol of disability. Inga has got her first wheelchair almost 2 years ago. But she has been using it only at home and at school. During outdoor walks or shopping we have always used buggy. We think we have been ashamed to use wheelchair a bit. Or we still didn’t want to accept […]